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Parents of ADHD Children

Scared by the list of Side Effects

OK so tomorrow my daughter will be starting Vyvanse.  She has been on Concerta, Adderal, and is still currently on Strattera.  Reading the list of possible side effects for Vyvance (and all the other ones she has been on) scares the crap out of me.  I don’t want to stunt her height and weight.  I don’t want her becoming more anxious and hearing voices.  Will someone please reassure me that these meds actually work (because we haven’t seen improvement yet) and it’s worth the scare of putting your kids on psychotic drugs.  I want what is best for my 7 year old.  I want her to learn and do well enough in school.  But I want to keep my happy, creative, and joyful girl too.  Just feeling scared I guess.  Any reassuring thoughts would be appreciated.

Replies

Don’t worry every medication has side effects and if your notice side effects within first month you can take her off of it.
You have to try to see what works best for your daughter if you not into medication maybe consider natural alternatives

Posted by Anthony18Mommy on Mar 06, 2014 at 5:26am

I wouldn’t be too concerned. My son (13 ADHD/ODD) has been on Vyvanse for about a year after being on Risperdone. I do have to watch his food intake as it really dulls his appetite. I make sure that he eats breakfast before taking his pill and then even if he’s not hungry lunchtime, he usually eats well for supper.

Posted by AJGO on Mar 06, 2014 at 5:38am

Vyvanse is not appreciably/extremely different from Adderall which she has already taken.  Which also brings me to this question—she’s taken one form of methylphenidate (Concerta) and one amphetamine (Adderall)—what were her experiences on each of those?

You say she’s currently taking Strattera —what about that, what is her experience with that.

One specific side-effect that you mentioned was stunting of height and weight.  Based only on a question a while back from someone else I’m wondering what the Vyvanse packaging specifically says about that (the poster didn’t reply to my question, but it seemed as though the packaging was misleading or worded strangely…something)?

Like all these meds everyone has different responses to them so you can’t know for sure going into it what to expect (worst case scenario vs best case scenario) but I can say that for lots of people Vyvanse is great!  It is the longest lasting of them all and it has much less problems with wearing off suddenly and causing rebound—but because it lasts so long & does cause a fairly high amount of anorexia for many, that does present challenges of it’s own.

Posted by BC on Mar 06, 2014 at 6:01am

My 7 yr old son has been taking Vyvanse for over one year now and he experienced dramatic weight loss and stunted growth. He’s had no other side effects and this has been the best med for him regarding school, grades, making friends, etc.  because of the dramatic weight loss, I have decided to keep him off meds on the weekends and days off of school.  We just started the med vacations 2 months ago after talking to his psych and pediatrician and he’s gained 6.5 lbs and grew .5 inch.  So we’ve decided to discontinue meds on weekends and summer vacation to help keep his weight up and continue growth.

The downside, we stopped playing sports on weekends because he has difficulty focusing and participating and he’s a bit of a wild man!  I figured that was ok for now since he’s so young and growth was more important.

As others have written, different kids have different reactions. For us, Vyvanse with breaks makes the most sense.

Good luck!

Posted by DP0706 on Mar 06, 2014 at 6:38am

I received a “copay” card from Vynanse and it stated “stunted growth in height and weight” as a possible side effect. 
The Concerta we tried first and it seemed to work the best, however after 3 weeks it made her terribly angry.  And she is typically such a happy kid.  I was told today that Concerta and Vyvanse are from the same family, but like has been said, it doesn’t seem to present the same intense side effects.
Is the stunted growth due to the lack of eating??
Crossing my fingers….

Posted by Ljoe on Mar 06, 2014 at 6:42am

I was told the stunted growth was due to a lack of eating. I found out he was throwing his lunch away every day. For the past 8 weeks, he’s had a big breakfast including one bottle of pediasure, a small lunch made up mostly of finger foods (fruit, crackers, juice) a snack after school, dinner and another pediasure before bed. Generally smaller meals more often. On the weekends, he seems to eat all day long.

Posted by DP0706 on Mar 06, 2014 at 6:56am

Concerta & Vyvanse are NOT from the same family.  If it worked the BEST of the two different classes of stimulants you’ve tried (but at 3 wks into it, either IT or something else “made her mad” but it was determined by both you and her physician that the ONLY reasonable explanation was that it WAS the Concerta so, I presume the Concerta was stopped…and Adderall was tried next)??

[If my assumption is wrong please let me know!]

Continuing on with what I PRESUME happened…Concerta was stopped; Adderall was tried next (but for whatever reason it was stopped); and now a third stimulant (Vyvanse) will be tried.

If you could give me a bit more info about all the blanks I’m trying to fill in perhaps some better conclusions could be drawn?  (Whether it makes more sense to try Vyvanse or to try a different methylphenidate seems to be the REAL question to me based on what I understand so far).

Posted by BC on Mar 06, 2014 at 6:57am

I forgot to add—all of the stimulants have been implicated at some point with causing stunted growth/weight.  Once upon a time the studies seemed to overwhelming conclude either:
• that they DID stunt growth, or
• that this was inconclusive.

So more studies were done over longer periods of time and/or some of the participants that were originally studied were followed up on later on down the road.  What these results ended up showing is that over the long-run there was no stunting of growth.  Those kids who do have some short term negative effects (fall beneath their place on the growth curve) end up getting back to where they once were on the growth curve. 

It was convincing enough at the time that it completely negated the one and only reason I did not want to start my kids on any meds for ADHD (not yet at least).  I had been playing the waiting game trying to let them grow and hoping their high IQ’s, etc. would save them from absolutely NEEDING to take meds (and it was tough because being an adult who’d gone through life with undiagnosed ADHD—but the high IQ that completely obscured it—I now knew emphatically and beyond a shadow of a doubt that life with Vyvanse was a whole lot easier than life without it).  I wanted THAT for them but did not want to be responsible for shaving off even a half an inch off of their already vertically challenged (15th percentile since birth) lives as MALES.

Those 2-3 years I avoided medication…well if I had it to do over again I would trade height (even if it was conclusively established that growth IS stunted) for ALL of the problems that unmedicated ADHD has brought with it.

Posted by BC on Mar 06, 2014 at 7:23am

Concerta 1st.  Stopped due to the fact that IT made her angry.

Adderal 5mg didn’t seem to do too much.  Adderal 10mg made her draw obsessively to the point that she didn’t want to do much else but make drawings ALL DAY LONG.  They were everywhere.  She also showed little interest in socializing.  Off of meds, she is pretty social and bubbly.  She was also more anxious on Adderal 10mg and the 5mg didn’t seem to do enough to warrant keeping her on it.

Next we tried Strattera, thinking that perhaps a non stimulant would help her.  She is her bubbly, chipper self, but her attention span in horrible.

Today we met with a psychiatrist for the first time.  (In past we have used her Ped.) She said Vyvanse would be a good next step.  Lower side effects (except for the appetite… but my daughter still ate pretty well on Concerta and Adderal, so I’m hoping it won’t be a big issue with Vyvanse either.)  She also mentioned Daytrona (sp?) as an option and one other I cannot remember.

Posted by Ljoe on Mar 06, 2014 at 8:22am

Dear Ljoe,
I don’t have the time right now to read all the replies, so please forgive any redundancies.  My son, age 15 has been on Vyvanse for 5 years.  He is in the 75% for height and is not underweight though he is thin.  My understanding about these two issues is that studies have shown some DELAY in growth and weight but by 20 years of age it seems they have caught up to their expected weight and height based on their original growth curves(this of all stimulant medications not one over the other).  I LOVE Vyvanse.  Is it perfect no, BUT it has made the world of difference.  My son is currently in the 4th highest rated public high school in the country.  It was 100% his doing to test and get in.  When I was where you are now, I was also very frightened and felt terribly guilty. I was conflicted day and night. We went through a lot of different medications.  First Ritalin, then Ritalin LA, then Concerta, Focalin and finally to Vyvanse.  It’s so hard.  My son reports that he feels himself coming down from the vyvanse in a much more gradual way than the other meds.  He does NOT have any “rebound” from it like he did his other medications.  Currently he is on 40 mg Vyvanse and 5 mg Aderall in the afternoon as a booster for homework.  One thing my doctor told me that was priceless is that after the medication wears off to let him eat as much food as he wants.  So as with you, he eats a good breakfast before taking it and for the first three years at night he ate non stop for about three hours.  I’d say in the last two years, the side effect of appetite suppression has subsided somewhat and he does also eat a decent lunch.  If I can be of any more help/support feel free to contact me directly through the ADD connect site.  Best of luck and good for you for reaching out.  Hang in there.  Life is pretty good around here most days now.

Posted by Ilana on Mar 06, 2014 at 9:15am

So the pediatric psychiatrist has determined basically about the same as I (presumptively) did—that there is simply not enough information to go on right now to be able to say that your next choice should be limited to picking one class over the other (because she offered you options from both classes).

The two different classes of stimulants are Methylphenidates (MPH) and Amphetamines (AMP).  The majority of people will respond (meaning have a decrease in ADHD symptoms) to one of the stimulant medications. 

Of those who do respond, some will respond to drugs in both the MPH and the AMP class but they will almost always respond better to one class than the other; some will respond to ONLY drugs in one class but not the other; some will only “partially” respond; some will respond to neither class.

The MPH class includes Ritalin, Methylin, Focalin, Metadate, Daytrana, Concerta, and Quillivant.

The other class of stimulants (AMP) includes Dexedrine, Adderall, and Vyvanse. 

Were there any dosage changes with the Concerta? Or was she always taking the same dose over the entire 3 week period?  I’m guessing that there was a dosage increase then that increase is what you reported as “making her mad”???

I think it’s a good thing that you switched from the pediatrician because the choice of prescribing Concerta right off the bat just isn’t a good one—IMO.  A much better choice is to start with a short-acting, immediate-release MPH to see HOW the patient responds and to determine what dose is best, then switch to a longer acting agent if that is desired (the longer acting MPHs have variable & different rates of distribution so starting with those can just make things very, very confusing).  For example, Concerta is a continual release distribution but the peak plasma level of the drug is not reached until 6-8 hours after taking it, and it lasts ~12 hours.  Having the most “effective” period of time be later in the day just isn’t what is “expected” nor is it ideal for many people (school is already mostly over).

Hope she’ll be starting on the lowest dose of Vyvanse—20 mg, and yes, for some Vyvanse is great but Adderall makes them too anxious, jittery, edgy, tense.  Adderall has a component that Vyvanse doesn’t (levo-amphetamine) which does nothing for focus & attention, just makes people jittery & anxious.  Sorry if just TMI.

Posted by BC on Mar 06, 2014 at 9:45am

Llana. 
Thank you so much for your reply.  That helped a lot. 

Thank you everyone for your responses.  It’s now morning and we’re about to give Vyvase a try.  Wish us luck…..

Thank you again!

Posted by Ljoe on Mar 06, 2014 at 4:04pm

OK School just emailed me. Said she was acting a little strange. Clicking tongue. Spoke to classroom teacher and she said her mouth seemed extremely dry.  Does that go away. So apprehensive this time!!

Posted by Ljoe on Mar 06, 2014 at 10:30pm

It will eventually get better but might take a very long time—weeks or months (I can’t remember how long that lasted for me).

Posted by BC on Mar 06, 2014 at 10:59pm

Well, Vyvanse has been by far the WORST in terms of side effects for my daughter and we have only been on it for less than 12 hours.  :(  We took the lowest dose but it’s too much for her.
So disappointed it didn’t work and sad for my little girl laying next to me who clearly has too much stimulant in her body right now.  Can’t wait for it to ware off.

Posted by Ljoe on Mar 07, 2014 at 12:27am

So, other than the dry mouth what things indicate that she “clearly has too much stimulant in her body right now”?

Posted by BC on Mar 07, 2014 at 1:34am

Curious…what dose did the doc start her on? 

My 8yo daughter started Vyvanse on 5mg.  Didn’t notice any improvement (which we figured b/c 5mg is so, so low) so we increased to 10mg.  Waited about 1 week then increased to 15mg.  We could tell it was better but still not adequately addressing ADHD symptoms.  But when we increased to 20mg she got very agitated and angry…which is how she has responded to most other stimulants.  She can handle low doses, but then they are not ‘doing the job’.  Eventually added Intuniv to the lower dose of Vyvanse to help. 

She didn’t experience any of the scary side effects.  Rebound time was easy to identify…that can be rough (but it did diminish after about a month). And loss of appetite, but that seems to have improved over the months.

Posted by CBak on Mar 07, 2014 at 1:52am

CBak:
The lowest strength of Vyvanse is 20 mg.

Posted by BC on Mar 07, 2014 at 1:58am

Well she “clearly has too much stimulant in her body right now” may be worded wrong, but she has too much medicine or just a bad response.
Constant involuntary tongue movement, glossy eyed, fidgety contorting/squeezing hands with constant movement, zoned out.
I can’t wait until it leaves her system.

Posted by Ljoe on Mar 07, 2014 at 2:28am

Does today seem pretty similar to her response to Adderall?  I think you said that made her anxious at 10 mg.  Was it that same kind of fidgety stuff as well?

Posted by BC on Mar 07, 2014 at 2:34am

Not even closely related reactions to meds.  We had her on Adderal for months and any side effects were mild in comparison to what I have witnessed today.  I wouldn’t put my kid back on Vyvanse for even another day.  It is overwhelmingly clear from her response today that this is not the med for her.  Dr’s today have all said not to put her back on it.
And so the search continues….
Thanks for the input.

Posted by Ljoe on Mar 07, 2014 at 2:42am

My son is on the 20 mg Daytrona patch. Its a stimulant like Vyanase. It works great. Since being on it, I am no longer called to come to school to pick him up early because his teacher is sick of dealing with him. Since he’s been on it, I don’t have to sit next to him for hours to make sure he gets his homework done. He just sits down, ON HIS OWN, and does it.

The meds have a few side effects. If we forget to take it off at a certain time, his emotions are a little flat and he complains that he has a little trouble staying asleep. We also leave it off on weekends to give him a break. But other than that, its great. I asked him if we could take it off early and he said he didn’t want to because he is aware of how much it helps him. He is 9, by the way.

Hope this helps.
Susan in PC, Ohio

Posted by SueH on Mar 07, 2014 at 6:45pm

A good pediatric psychiatrist would never put a 7 year old on both those meds.

Posted by YellaRyan on Mar 08, 2014 at 1:30pm

YellaRyan:

Both “what” meds?

Posted by BC on Mar 08, 2014 at 8:58pm

Hi Ljoe, I didn’t start taking Adderall until I was diagnosed at 30, so I can’t speak directly to the effects on kids, but I will say—don’t be afraid to try these medications. The benefits that can come from them, especially for kids, are really amazing, and if I could go back in time and take Adderall as a kid, I would in a heart beat. My life would have been really different, and I would have had MUCH higher self esteem.

I was scared of the side effects too. I honestly didn’t have reason to be, just things I had read in the media. It took a while for the doctor to convince me, but Adderall has worked wonders for me. I have a 12 year old relative who recently started taking it and his life has changed completely, he’s much happier and his parents are really glad they took this step.

These medications obviously aren’t for everyone, but if your child benefits from them, I would give it a chance. Again, I have not taken them as a child, but I have not experienced any serious side effects from Adderall or Vyvanse, which I took during the Adderall shortage, myself. If there are any side effects, they are much more pronounced when you first start taking it and then wane a bit over time. The one thing I experienced was appetite loss, but again, it is not as pronounced as when I first started. The benefit of being a kid with this side effect is that you have adults who make you food and tell you when it’s time to eat. And while you may lose your appetite, you don’t necessarily lose your hunger, so if your daughter backs off a bit from lunch one day, she’ll probably be hungry enough to eat dinner. In the end, no one is going to starve themselves just from taking a stimulant. I’ve never experienced ANY psychotic effects from Adderall or Vyvanse.

I did also try Concerta briefly during the Adderall shortage, and I did NOT like it. It didn’t seem to help my focus as much, and it made me sort of mildly nauseated. That just means I’m more of an Adderall/Vyvanse person than a Concerta/Ritalin person. Some people are sensitive to some types of drugs and not others. I think the bottom line is if your daughter has tried a bunch of these different drugs and they seem to helping and not hurting, pick the one she does best on and give it a chance. If you don’t see any benefits, maybe she’s not even ADHD—see if there is something else that could be causing her problems. If she has bad side effects and they don’t get better, see if there’s something else you can try. I would definitely say that it is worth it—if I had ADHD children I would not hesitate knowing what I know now.

Posted by LLB827 on Mar 26, 2014 at 6:23pm

P.S., I just read through your other comments about what happened on Vyvanse and Adderall. It seems like Adderall worked out ok—why did you take her off? What were the effects with that? Personally I felt Adderall was far more effective than Vyvanse.

Posted by LLB827 on Mar 26, 2014 at 6:39pm

LLB827,
Thanks for your comments. Adderal was not all bad. She was on too high a dose for a while. The low dose seemed to help some but her teachers didn’t seem to think it was doing much… So then my thought was to keep trying other things.
She was tested by a psychologist and does indeed have severe ADD. She is also LD, so I’m not expecting miracles. But I did expect Adderal to work better. Luckily, I teach high school and have had conversations with many of my students with ADHD who have been able to better articulate some of the side effects they feel and I can see some resemblances with my daughter. Adderal may be visited again when she is older, but I honestly didn’t feel it was working well enough to warrant her being on it.
The Vyvanse was a nightmare.
We will be starting her on Quillivant in a week. She seems pretty sensetive to the stimulants so we are starting lower than the recommended dose and work our way up as necessary.
Thanks everyone for the feedback. It has been helpful as we try to figure this all out.

Posted by Ljoe on Mar 26, 2014 at 8:36pm

“The low dose seemed to help some but her teachers didn’t seem to think it was doing much.”

I wouldn’t let this keep you from the lower dose of Adderall (which can always be increased over time when she gets used to it/gets bigger). Even as an adult, you start off with a low dose and increase every few months. The lower dose doesn’t necessary cause radical changes right away, it’s all part of a process.

Also, just because the teacher doesn’t see it, it doesn’t mean it’s not working. If you start taking Adderall one day and are immediately a totally different person, it’s probably not a good thing. It doesn’t and shouldn’t change your personality, and things like grade and performance gradually get better over a bit of time. I imagine it’s so difficult with young kids because they’re aren’t really aware what’s going on. It could be that the Adderall is having a subtle effect of making her more calm or focused that will become more apparent over time.

Good luck with trying all these different things, I certainly do not envy it!

Posted by LLB827 on Mar 27, 2014 at 7:13pm

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